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    BigSister wrote on KellyR's wall

    Hi Kelly, my brother was diagnosed in June 2012. We still don't know where the primary is/was but it was found when it metastasized to the liver. He has undergone 6 months of chemo and just finished 3 months of a "holiday." Found out yesterday it has spread to his lower spine and a lymph node on his lung. Waiting for the doctors to meet on Monday and decide what kind of chemo he will start next week. Would love to stay connected with you--its very tough to find someone to relate to!

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    BigSister asked a questionCancer of Unknown Primary

    Poorly differentiated neuroendocrine cancer

    7 answers
    • Dal's Avatar
      Dal

      Novartis Oncology also has an informative website called NET Alliance that is all about NET cancer. http://www.thenetalliance.com/

      about 4 years ago
    • BigSister's Avatar
      BigSister

      Thanks, Dal. I agree with the needing specialized care for sure--very difficult to find, however, as I understand it carcinoid is not treated the same as small cell so not certain these sites will help. I'm going to check them out though!

      about 4 years ago
    • mfranke's Avatar
      mfranke

      my mother was just diagnosed with this. St. Louis MO

      almost 4 years ago